POLICY PAPER Early Diagnosis of Autism in the United
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POLICY PAPER Policy Paper 34 January 2020 EXECUTIVE SUMMARY Early Diagnosis of Autism in Autism is a lifelong neurodevelopmental disorder that is characterized by impaired the United Arab Emirates: social interactions, verbal and non- verbal communication, and stereotyped, Autism Knowledge and repetitive behaviors. While the Autism prevalence in the United Arab Emirates (UAE) is comparable to that observed in Attitudes Among Primary other countries, children in the UAE are being diagnosed later as their conditions Healthcare Providers in are not being detected by the available pediatric healthcare oversight protocols Ras Al Khaimah or being reported by parents. Pediatricians and parents are at the best vantage Agata Wentz, Pedagogical University of Krakow, Poland point to spot the earliest warning signs of autism. If the disorder is detected in Introduction its infancy, early intervention programs An estimated one in 68 children in the United States is identified with autism, a can help ameliorate the symptoms neurodevelopmental condition that is part of a continuum of disorders collectively significantly. This study provides insight known as autism spectrum disorders (ASD). Autism is one of the most expensive medical into the important issues impacting conditions for the country and, furthermore, one of the most common causes of disability autism’s early detection in the UAE, using among children in the world (CDC, 2013). The World Health Organization (2019) estimates the emirate of Ras Al Khaimah as a case that an average of one in 160 children worldwide has ASD. However, this is only an study to better understand and mitigate average, and estimates of the prevalence of autism vary substantially across studies local phenomena that might be delaying depending on diagnostic criteria, age of the children screened, and geographical location. diagnosis, negatively impacting the future of autistic children and their families. In addition, despite the fact that estimated prevalence rates of ASD vary across regions, and that the numbers from many low-and middle-income countries are still unknown, the global prevalence of ASD appears to be dramatically increasing. This increase is estimated, based on epidemiological studies that analyze the incidence and distribution of ASD conducted over the past 50 years (WHO, 2019). This apparent increase may be explained by improved awareness, expansion of diagnostic criteria, improved diagnostic tools and practices, and better reporting (Newschaffer, 2007). Another hypothesis is that all above-mentioned factors, including better ascertainment, especially for children at the less severe end of the spectrum, explain only a part of the linear increase observed. Indeed, numerous studies support the evidence suggesting a contribution of environmental risk factors (Chaste & Leboyer, 2012). Therefore, it is reasonable to assume that there may be both a real increase in the number of autism cases and an increase in the ASD detection in children. ‘’Autism’’ was first described, clearly defined, and used as a diagnostic term by Leo Kanner, a child psychiatrist from Johns Hopkins University Hospital in the United States in 1943 (Kanner, 1943). Since Kanner’s first publication on autism over 75 years ago, the vast majority of the global research concerning the spectrum of autism has been conducted in the Anglo-Saxon world. This creates an illusory and fundamentally false impression suggesting that autism is a phenomenon the scale of which is alarming in the western world and virtually non-existent in non-western societies (Mostafa, 2011). In the Arab world, ASD has been a topic of discussion since the late 1990s. Yet, the current state of epidemiological studies of autism conducted, especially in the Gulf Cooperation Council countries (GCC), highlight that there Overview of Autism and its are gaps in the literature, research agendas, and public Socioeconomic Impacts health policies and practices related to the theoretical, practical, and therapeutic components of ASD diagnosis, With a growing body of research and frequent changes management, and widespread familial and societal of diagnostic criteria, clinical definitions of autism impacts. Furthermore, few researchers have addressed the constantly evolve. The current Diagnostic & Statistical 2 issue of autism diagnosis in the GCC and the critical role Manual of Mental Disorders (DSM-5) by the American of primary healthcare professionals in the process. Early Psychiatric Association describes autism as a lifelong detection is essential for early intervention, which can neurodevelopmental disorder that is characterized by help ameliorate the symptoms significantly, improving impaired social interactions, impaired verbal and non- the quality of life for families and the prognosis of ASD verbal communication and stereotyped, repetitive sufferers. In fact, one influential study in the United Arab behaviors (DSM-5, 2013). Symptoms may include, among Emirates (UAE) highlighted worrisome trends, such as others: unresponsiveness, self-abusive behaviors, learning the lack of timely diagnosis and a sustainable screening to speak relatively late, intense focus on one item, scheme (Eapen, 2007), which have negative impacts on avoidance of eye contact and social withdrawal. Autism the effect of subsequent interventions. Such impacts lead may significantly limit the child’s capacity to conduct to lifelong impairments that were potentially treatable if daily activities and develop self-help skills such as self- caught early enough. feeding, independent dressing and grooming, hygiene and toileting, or helping with daily chores. The severity of these Early symptoms of autism and the awareness thereof symptoms varies widely among affected individuals, and among pediatricians and general practitioners, the it is important to note that not all individuals with ASD use of screening tools,1 and issues concerning timely experience all of the symptoms listed. This is because, as referral to early intervention providers are a neglected previously mentioned, the condition is part of a continuum area in the field of ASD research in the GCC and, as of disorders collectively known as autism spectrum highlighted above, in the UAE. Thus, there is a need to disorders (ASD) and is classified under the general category better understand opinions, perceptions, and concerns of of pervasive developmental disorders (PDDs). primary healthcare providers regarding autism spectrum disorders in order to fill the gaps in the screening and The etiology of autism is still a matter of speculation. Many diagnostic processes of ASD. researchers agree that the causes of autism are likely to be genetic3, although the genetic linkage is complex and This study provides insight into the factors impacting has been inconclusive. Others have suspected that the autism’s early detection in the UAE, using the emirate of factors are biochemical, neurological, and environmental Ras Al Khaimah as a case study to better understand local (Amaral, 2017). Most experts agree that there is no cure phenomena that might be significantly delaying diagnosis. for autism. The current treatment options are limited to The paper first provides an overview of what autism is, the management of core symptoms or development of as well as its regional epidemiology and socioeconomic skills, which includes behavioral and educational therapy. impacts. It then investigates the level of knowledge and No medication is approved for use in treating the core awareness of the key aspects of autism among children’s symptoms of ASD. However, some evidence exists that one primary healthcare providers, which are pediatricians and medication, risperidone4, may be effective in treating the general practitioners, practicing in various locations of Ras repetitive and restricted patterns of behavior in children Al Khaimah. It also provides recommendations to address with autism (DeFilippis & Wagner, 2016). questions of access to continuing education on ASD- related subjects, the use of autism screening tools, and The most commonly used evidence-based treatments for community awareness. children with autism are: Speech and Language Therapy, 1 Screening tools can be specific to a disorder (for example, autism: STAT, MCHAT) or an area (for example, cognitive development, language, gross motor skills: PEDS, CSBS, ASQ). Screening tools, by definition, are not designed to provide a conclusive evidence of a disorder. Their aim is to help identify children who might have a disorder. A positive screening result should be followed by an in-depth assessment. 2 DSM is the handbook used by healthcare professionals in the United States and much of the world to diagnose mental health conditions. An alternative classification system to DSM is International Classification of Diseases (ICD) by the World Health Organisation. 3 The recurrence risk of autism in siblings of ASD-affected children is estimated to be between 10% and 20% (Szatmari et al., 2016). 4 Risperidone appears on the list of restricted and controlled drugs in the United Arab Emirates. Retrieved from: https://www.government.ae/en/information-and-services/ health-and-fitness/drugs-and-controlled-medicines/controlled-medicines- Sheikh Saud bin Saqr Al Qasimi Foundation for Policy Research Sheikh Saud bin Saqr Al Qasimi Foundation for Policy 2 Applied Behaviour Analysis (ABA), Cognitive Behaviour add to them by staring, commenting and making our life Therapy (CBT), and Occupational Therapy. All of these